By Justin Ozuna
Justin Ozuna lives in Dallas and was diagnosed with chronic myeloid leukemia in January 2006. He is a Texas state representative and Dallas/Fort Worth facilitator for The National CML Society and a patient at MD Anderson. His mission is to capture the ups and downs of a young adult living with cancer and to serve people through humor, encouragement, hope and adversity at his blog, theozunaverse.com.
A couple of hours after I received a call from my doctor, notifying me of my leukemia, I walked into my house. There sat Josh, my younger brother, in the chair opposite the front door and my dad on the couch immediately to the right.
I could tell by my brother's tears that word had already gotten back to them about my diagnosis. I immediately felt I had to do something.
From the deepest source of strength I could summon, I calmly shared with them the details of my diagnosis. I wasn't quite sure what it all meant at the time, but it didn't matter. What mattered was communicating to them that I'd be OK.
Cognitively, I knew the heartache wasn't my fault, but I also knew that if I weren't diagnosed with cancer, the room wouldn't have been so heavy that evening. Complex emotions give way to irrational thoughts; the subconscious does everything it can to convince you that you're in control of the heartache and pain of others.
Protecting my family
For the next few months my family was involved in doctors' visits and treatment progression. As my medicine started to work and the fear of a cancer diagnosis began to recede, I reaffirmed for them the belief I shared upon diagnosis: I'll be OK.
May 2012 Archives
By Justin Ozuna
By: Ed Steger
Ed Steger is a head and neck cancer survivor. He was diagnosed in 2005 and after rough patches in 2006 and 2007 has been in remission. He writes a blog about his cancer experience at www.hncancer.blogspot.com.
As part of my volunteer activities as a patient research advocate in MD Anderson's head and neck SPORE (Specialized Programs of Research Excellence) program, I've observed multiple patients going through the tumor tissue biopsy consent process.
These sessions were generally held a day or two before major surgery, thus competing with the patients' already extreme stress, strong emotions and very trying circumstances.
The clinician asking for the biopsy consent was well skilled in communicating with each patient/caregiver the process of donating their cancer tumor tissue for research purposes. Yet, there were still questions, some explicit, others implicit, asked by patients and caregivers in those consent sessions.
Witnessing these interactions makes it clear to me that increased patient awareness and information beforehand could make this an easier process for the patient, clinician and doctor, ultimately improving the science of curing cancer.
What you need to know
At some point during your cancer journey at MD Anderson (or at your own cancer center) your doctor may ask for your consent, or permission, to use your tumor tissue for research purposes. If you consent, you will be asked to sign a form to that effect.
There are three distinct purposes for evaluating a tumor sample:
By Cathy Williams
Cathy Williams is a cancer survivor and former patient at MD Anderson. She and a group of volunteers paint storefront windows with pink ribbons every October to raise awareness and funds for inflammatory breast cancer (IBC).
Williams began painting the ribbons on business windows in exchange for donations to breast cancer research in 2006. Despite her own diagnosis of IBC in April 2008, she has continued her efforts but now focuses solely on highlighting IBC.
I'm an inflammatory breast cancer survivor.
Easter Sunday, I celebrated four years since my diagnosis. Immediately after diagnosis, before the shock wore off, I found myself asking, "Why me?"
I have the answers
I've always been an advocate for breast cancer awareness. My mom was diagnosed with breast cancer at 32, died at 43, and two of her sisters also died of breast cancer.
At my doctor's insistence, I got my first mammogram at 28, had one every five years until I was 38 and then every year after that.
Why did I have to get breast cancer that doesn't show up on a mammogram? Why did I have to get the most aggressive and deadly form of breast cancer? Why, with my careful breast cancer screening, was I diagnosed with late-stage breast cancer?
No sooner than I had formulated the questions, I knew the answers.
By Rachel Midgett
My story begins in January of 2009. My husband and I had been married for 11 years and I was about to turn 37.
Life had been good to us. We had great families, friends and careers.
We took fabulous vacations and had just built our dream home, where we hoped to raise our future family.
We'd been trying to get pregnant for the last three years to no avail, so it was time for us to try in vitro fertilization (IVF). In January 2009 we began the shots, egg harvesting and implantation process.
By March, I was pregnant. By the end of April, I had miscarried.
My worst nightmare
A week before we planned to start round two of IVF, I noticed a lump above my left breast. My reproductive endocrinologist sent me to get a mammogram and ultrasound.
It was a cyst, but under my nipple I had a 4 cm tumor that turned out to be malignant.
After my mastectomy, I made it to Dr. Jennifer Litton at MD Anderson for treatment. It was then I found out that it was also in my liver.
I was stage IV, my worst nightmare.
My husband and I were in complete shock. I asked Dr. Litton about my prognosis and she told me the "textbook" answer was two years. Two years? Just a few months prior, I was wondering if we would have a family. Now, I was wondering if I'd live to see my 40th birthday.
By Andrew Griffith
Andrew Griffith has mantle cell lymphoma and had an auto (November 2009) and an allo (August 2011) stem cell transplant. He lives in Canada and is married with two young adult children. He blogs at www.lymphomajourney.wordpress.com, is working on a book on his journey, and can be followed on Twitter @lymphomajourney.
Part II of yesterday's post: What we call ourselves -- finding the right term for cancer
The new beginning
We stop looking back. We get on with our life post-recovery. We come to terms with what's the same and what's changed. We define our "new normal." We keep in the back of our minds that time is precious, may be limited and that our cancer could come back.
We use a number of terms to describe ourselves, reflecting in part who we are as much as what we've gone through.
Intern, student and graduate: As our treatment progresses, so does our transition. We progress from being interns (diagnosis), to students (treatment) to graduate (recovery and post-recovery). We've learned how to be a patient and studied far too much information on our cancer and treatment. At the end, we have a mix of theoretical and "living through it" knowledge that allows us to graduate.
This transition also takes place on an emotional level. As an intern, we may be angry and frustrated. As a graduate, we have largely come to terms with what our cancer means for the future.
By Andrew Griffith
Andrew Griffith has mantle cell lymphoma and had an auto (November 2009) and an allo (August 2011) stem cell transplant. He lives in Canada and is married with two young adult children. He blogs at www.lymphomajourney.wordpress.com, is working on a book on his journey and can be followed on Twitter @lymphomajourney.
During the past few years, I've reflected on the terms people use to describe their life with cancer. Initially, I tried to write a glossary of the terms: hero, warrior, fighter, veteran, graduate, survivor, victim or living with cancer.
In trying this out with a few friends, one having gone through a comparable experience, one not, it didn't work.
People adopt different terms at different stages; a journey approach captures this better than an analytical approach.
Rather than the Kubler-Ross five stages (denial, anger, bargaining, depression, acceptance), written for the terminally ill, I find the William Bridges framework in "Transitions: Making Sense of Life's Changes" more helpful.
Bridges talks about three phases: ending (or losing and letting go), the neutral zone (in between, or ambiguous phase) and the new beginning (acceptance and embracing).
Circumstances change quickly, transitions take time. This provides a convenient frame for cancer: from "normal" to a new "normal," which we can accept, if not embrace.
Ending, losing and letting go
Our life falls apart when we are diagnosed with cancer. Our normal view is shattered, our expectations crushed and we have an overwhelming sense of loss. Cancer isn't a pink ribbon; a slogan like "cancer sucks" captures our mood. We tend to be inward focused, coming to terms with our thoughts and feelings.
By Janet Ruffin
Janet Hull Ruffin is an artist, arts educator and poet. She is finishing a book of poems showing what it's like to work with critically ill children in a major cancer center. She focuses on hospital culture, the therapeutic nature of art and spirituality.
She retired from MD Anderson in January 2009 after serving as the art teacher in the Children's Cancer Hospital for more than 10 years. Her position was special because the time she spent with patients and their families was not about diagnoses, examinations or treatments. They made art together. Currently, she volunteers with the Children's Art Project working with pediatric patients.
One of the most powerful forms of creative expression is achieved by combining art forms.
I practiced this concept working on a spirit guides mask project with the pediatric patients in the Children's Cancer Hospital. Spirit guide is a term used to describe an entity that remains a spirit in order to act as a guide or protector to a person.
The children and I began by reading a story about spirit guides and discussing what kind of information we would want from our guide.
Next, we brainstormed to decide what our guides would look like. Adhering plaster gauze to plastic molds of the human face made the masks. It was necessary to build out features on some of the masks, like the dragon and cobra masks. An eagle and angel mask had wings attached. There were also bear, clown and a superhero masks.
Painting and decorating each mask took weeks because I met with each student individually at different time and in all different places.
Getting through cancer treatment is like surviving a siege.
When it's over, many patients resume their lives and don't look back.
For others, though, the experience compels them to help others in the same situation.
So they keep a foot in the world of cancer treatment by helping new patients individually, by staying involved with support groups, or by supporting research or advocacy efforts.
Here are brief profiles of three people who felt called to speak up for cancer patients. One lobbies for more research and awareness of pediatric cancers, another works one-on-one with patients and contributes to research, and the third counsels patients through the Anderson Network Telephone Support Line and a national foundation.
From the personal to the political
Val Marshall is the mother of a pediatric cancer patient, though pediatric hardly seems to apply to her tall, athletic son Addison, who will enroll at Texas A&M University this fall.
Since Addison was diagnosed with acute lymphocytic leukemia (ALL) nearly three years ago at the age of 15, Marshall has accompanied him to countless appointments and treatments.
By Kim Benz
Once upon a time, there was a girl who grew up on the beaches of Gulf Shores, Ala. As a teenager she would bask in the warm summer sun, her skin glistening with baby oil.
Fast forward a few years. At age 17, the girl discovered tanning beds and was instantly addicted.
The girl I'm talking about is me.
My name is Kim Benz. I'm a sun addict. Yes, this is a confession and if there was a tanaholics anonymous, I would most certainly be attending.
I love being outdoors and until about a year ago, I loved nothing more than lounging in the sun with minimal sunscreen. I did give up the tanning beds, but only two years ago at age 36.
I was diagnosed with skin cancer, a basal cell carcinoma, about 15 years ago after I had a suspicious-looking mole that often would bleed.
By Sophia E.
Continued from Chordoma, caring and coffee part 1
Obviously, a sense of humor has helped during the years as I had to learn to live with several residual handicaps after chordoma surgeries and radiation treatments -- accommodations for which are listed in the following litany, some of which may be helpful to others.
When dining with other people, try not to chew and speak at the same time (it's not polite, anyway). Spitting, coughing, choking and sneezing does not make for an attractive meal partner.
Order food that is moist and slides down easily, and sip liquids when swallowing. Fish, sauces, mashed potatoes, applesauce and thick soups work well. Experiment to find other choices.
Save the bagels, rolls, steak and thick corned beef sandwiches for home when you can cut them into small pieces and take two hours or more to eat. One gets tired of having everyone else's plates cleared while you're still eating and wind up leaving half of your food or taking it home.
Remember to do those throat, lip and tongue stretching exercises two to three times daily. They do help your smile.
By Cristina Rodriguez
I'm a 30-year-old non-Hodgkin's lymphoma fighter. It's not all that I am, but it's all I'm focused on at the moment. The purpose of my blog, lymphomamaniac, is manifold.
I want to record this experience, not just for myself, but for anyone who can relate to or learn from my experience. I want to let people know that cancer can be funny and cancer is not politically correct. Why should I care about cancer's feelings? Cancer sucks and I'm going to kick its butt.
"Intro to Stem Cell Transplant." That was the name of the class I took a couple of weeks ago at MD Anderson. This optional class made me think harder about it than anything since I started my battle against non-Hodgkin's lymphoma.
"Why them and not me?"
I know that sounds weird being that I'm going through a cancer battle, but let me explain.
This class was for stem cell transplant candidates and their caregivers to learn what to expect and how to prepare for the inescapable leave of absence from their homes. We got information on what a stem cell transplant is, the types of transplants, health risks and on and on.
I was alone in this class and that fact was not lost on me. It wasn't anybody's fault. My father was waiting in the lobby, since English is not his forte, and my husband was stuck working for the medical insurance I still so desperately need.
By Lura Lumsden, health education specialist, Patient Education Office - The Learning Center
Growing up in a small town in Virginia, I always had a huge vegetable garden, so eating healthy was easy. When I went to college, my diet changed. With my main focus on studying, I rarely cooked and often opted for quick meals that weren't always the healthiest option.
Since I began working at MD Anderson in The Learning Center, I've tried to live a healthier lifestyle. Good nutrition has become a priority, and I pay close attention to what my family eats. To ensure that we eat more fruits and vegetables, I prep all of the produce when I get home from the grocery store. I wash, cut and store it in the fridge so that I can grab and go.
What we offer
The Learning Center offers free information at all levels -- from very basic materials all the way to physician-level resources.
Although many of the cookbooks in The Learning Center are cancer-specific, the recipes are for anyone who wants to eat healthier.
Our Nutrition Pathfinder is a condensed list of reliable resources including books, cookbooks, videos, brochures and periodicals. Patients and family members are encouraged to use our email reference service to send us their questions.
Contact us at email@example.com.
Nutrition for patients
Proper nutrition is important for people who have cancer. The disease and treatment can cause changes in appetite. If you are experiencing changes in appetite or difficulty eating you should speak with a dietitian. At MD Anderson, every patient has access to a dietitian, so ask your doctor for a referral.
By Justin Ozuna
Justin Ozuna lives in Dallas and was diagnosed with chronic myeloid leukemia in January 2006. He is a Texas State Representative and Dallas/Fort Worth facilitator for The National CML Society. His mission is to capture the ups and downs of a young adult living with cancer and to serve people through humor, encouragement, hope and adversity at his blog, theozunaverse.com.
I'm not much of a runner. My only experience running a timed event was during a junior high track meet. I ran the equivalent of one lap, or 400 meters. It didn't turn out so well. I was responsible for the last leg of a 1600 meter relay so by the time I was passed the baton, the competition was three-fourths of a lap ahead of me. I didn't have a chance.
Early in my fight with leukemia, I felt much the same way. I was 25 years old, struggling to get ahead. It felt like life was passing me by. I was anxious for the baton, for a chance to sprint, because catching up with the world around me was the only thing I knew to do. Everything else, I figured, would take care of itself.
When I was younger, it was extremely difficult to wrap my mind around the big picture. I grew up in an excessive culture defined by immediacy and indulgence, where patience is considered weakness and investments are often vilified. To rely on endurance to get me through the trials and tribulations of life was a tough lesson to learn.
Race with a purpose
Four years after my diagnosis, I moved to Dallas and discovered I was growing resistant to Gleevec, a first-line medication. I learned of a mutation called t315i, which would prevent any known FDA-approved medication from working. It was at that moment I started to see things differently. I realized the futility of my self-centered approach to life and reinvigorated my efforts to run the race against cancer with a purpose.
I stopped believing life was a sprint. A diagnosis of leukemia didn't necessarily mean I was going to live a shortened life, it simply meant I had to run smarter, more effectively, and with purpose. I knew as soon as I let go of that truth, I would lose. And so I pressed forward. I decided to do whatever I could to cross the finish line with determination.
By Val Marshall
Val Marshall's cancer journey began in May 2009, when her son Addison was diagnosed with acute lymphocytic leukemia. A visit to the family doctor for what they thought was a simple high school football injury turned out to be much more.
Inspired by her son's strength and hope, Val strives to be a voice that connects other parents on this journey. Her series shares insight into her life as a mom of a typical teenager who just happens to be fighting leukemia.
Addison Marshall crush cancer
It's a bitter sweet time as Addie will be graduating on May 26 and will begin his new chapter at Texas A&M in August. When you have faced the world of relapse, you tend to fear the end of treatment and the hospital family that has caught your fall for 1,095 days, but who's counting?
Jack and I were invited to an MD Anderson fundraiser in West Texas a couple weekends ago and we reflected on the support system we've received as parents these last three years.
Apparently, other families have felt this love as well. Polo on the Prairie is in its 26th year and has raised millions of dollars for cancer research because one family has modeled what MD Anderson teaches us with hope, science and the never-ending quest for a cure.
By Adelina Espat and Laura Nathan-Garner
Looking for a treat to beat the heat? Try one of these cancer-fighting drink recipes.
Each provides plenty of fruity flavors with cancer-fighting vitamins and nutrients for just a fraction of the calories and sugar found in most beverages.
This first recipe is a sweet way to quench your thirst on a hot summer day. The orange juice and cranberry juice in this recipe offer a healthy dose of cancer-fighting antioxidants like vitamin C. You'll get the most vitamin C if you use freshly- squeezed orange juice, but refrigerated or frozen concentrate also will do the body good.
Get our recipe for Citrus Punch.
Sparkling grape party punch
Want to offer a festive alternative to alcohol at your next gathering? Serve this punch recipe. The grapes and grape juice provide a powerful dose of resveratrol -- the same cancer-preventing antioxidant in red wine -- with none of alcohol's drawbacks. And the citrus juices in the recipe give you a generous amount of vitamin C.
Get our recipe for Sparkling Grape Party Punch.
By Holly Easley
Holly Easley began her cancer journey five years ago when she was diagnosed with myelodysplastic syndrome (MDS). After two types of chemotherapy and a stem cell transplant, she says she loves life, is improving daily and enjoys blogging about the cancer experience at http://hollyeasley.wordpress.com/.
My husband and I arrived in Houston a week early for my stem cell transplant. We wanted to get him moved into an apartment and I needed several tests prior to the surgery.
My appointments that week included a CT scan, anesthesia assessment, transplant coordinator visit, bone marrow biopsy, echocardiogram, subclavian catheter insertion, complete pulmonary function test, social work visit, business office appointment and an appointment with Chitra Hosing, M.D., my stem cell transplant doctor.
One of the most helpful things I experienced that week was a stem cell pre-admission class. In the class, the nurse told us about everything from hospital admission to the dismissal. It was very informative.
Beginning the journey
I was admitted for my stem cell transplant on May 17, 2011.
By Sophia M.
Oh, does the aroma of freshly-brewed coffee smell good in the morning -- even if I cough and sneeze while drinking it. The coughing and sneezing are a small price to pay for having what, for me, is the perfect welcome to a new day. And, I surely did miss it during those endless months of recuperation.
I consider myself an optimist -- maybe as that famous song from South Pacific says, "A Cockeyed Optimist." Nonetheless, it took me a long time to say the words "I have chordoma disease."
I guess because I have always refused to consider this disease a major part of my identity, and although it is a definite part of my physical being, it is not the core part of my psyche.
That's not to say that I'm unrealistic. I just prefer to compartmentalize that aspect of my life and put that bundle of worries somewhere "over there" while I live as best I can. Of course, sporadic moments remind me each day of my post-surgical deficits and that this disease and I are inextricably intertwined.
Those moments include setting aside the necessary time each morning (after coffee) to do the mouth, lip, tongue and stretching exercises to keep my speech and eating mechanisms more facile.
Looking back at the events that brought me to MD Anderson compels me to relive some painful, poignant memories. But I'm writing these words in hope that my story can, in some small way, provide inspiration for others.
By Angela Rankin
Angela Rankin is a three-time primary cancer survivor, who attributes her positive attitude and "fighting" stamina to her faith, family and friends. The excellent care received at MD Anderson gave her "healing confidence."
She continues to fight as she also deals with Parkinson's disease and severe back problems. She's been an active member of MD Anderson's Celebration Singers, a singing group made up of cancer survivors and caregivers, and has no doubt that music heals.
When I was diagnosed with stage three ovarian cancer in 2005, I knew I had a long road ahead of me. Then, the "road" took a series of unexpected turns when I was diagnosed with breast cancer, melanoma and Parkinson's disease within the next three years.
I was being treated at the No. 1 cancer hospital in the country, but I also needed medicine for my mind. That's when I decided to focus on music. "He who sings scares away his woes." (Cervantes)
By David Renninger, facilities project manager
As one of the world's most respected cancer centers, MD Anderson symbolizes excellence. This includes our facilities -- a network of state-of-the-art buildings interconnected by lushly appointed gardens and green spaces throughout the main Houston campus.
The beauty of our gardens is recognized throughout the region, but they serve a much larger role than to simply add curb appeal to buildings.
MD Anderson's gardens and green spaces contribute to a holistic healing process, lift the spirits of patients and improve patient satisfaction.
The mission of our in-house grounds and landscape team is to enhance the MD Anderson experience by creating and maintaining healing and therapeutic environments of care for patients, visitors and staff.
The gardens are dynamic environments and always in a state of renovation. We constantly strive to capture the interest of garden visitors and provide them with a positive distraction from the burdens of their hospital stay.
By Toni Franciosi, Department of Social Work
Receiving a diagnosis of a life-threatening illness like cancer may be one of the greatest agents of change that exists -- a change that can lead to the pursuit of healing, not only for the body, but also for the mind and spirit.
For cancer patients and their caregivers alike, diagnosis and treatment may become an all-consuming, anxiety-provoking game of survival.
The mind and body connection
The strain of undergoing treatment and caretaking may seem relentless at times. But it's important to remember that our own thoughts and perceptions about what's happening can fuel an even greater "stress response," that can compromise healing. Under stress, the body experiences an increase in cortisol, blood pressure, blood sugar levels, cholesterol and heart rate, as well as lowered immune response.
The mind and spirit suffer the consequences of stress as well. When the mind judges a situation, specifically as "good" or "bad," we are vulnerable to feeling isolated and separate.
Attitude is everything
Stressors in life cannot be eliminated, but they can be better managed.
The Greek philosopher, Epictetus, reminds us that "it is not what happens to you, but how you react to it that matters." Attitude is everything. Learning to relax the body and mind furthers the healing process by fostering greater levels of healthy biological markers, compassion, emotional stability, immune response and overall well-being.
Katrina Burton, MD Anderson Staff Writer
With nearly one in five teens smoking cigarettes, there is no better advocate for smoking-cessation than Breanna Jordan, a senior at Stone Mountain High, a school nestled in DeKalb County in Georgia.
As a member of the National Honor Society, varsity cheerleader squad and active participant of SADD (Students Against Destructive Decisions) - a student-run program that discourages students from drinking, smoking and engaging in destructive behaviors - Jordan is no stranger to peer pressure and what's popular among teens.
"Smoking is the in thing to do for those going through the cool phase," says Jordan. "There is a lot of stress that comes with being a teenager, and some think that smoking among other things helps relieve that stress."
Jordan says it is not only the hygiene problems - bad breath, bad teeth and body odor - that have made her say no to smoking, but diseases like cancer that concern her. Jordan, like most people, has either had a personal experience with cancer or knows someone whose life has been touched by the disease. Just last year her aunt died of a non-smoking related cancer - ovarian cancer.
By Charles Haynes, J.D.
In 2006, frustrated by the lack of research and treatment options for patients with ependymoma, Mark Gilbert, M.D., deputy chair of the Department of Neuro-Oncology at MD Anderson, proposed creating an international group to develop new treatments for this rare type of brain tumor.
Under Gilbert's guidance, the Collaborative Ependymoma Research Network (CERN) Foundation was established with the mission of developing new treatments for ependymoma, improving the outcomes and care of patients and, ultimately, finding a cure.
Today, the CERN Foundation is a dynamic, multi-institutional collaborative effort comprised of investigators from over 20 international cancer centers with leadership from MD Anderson (for adults) and St. Jude Children's Research Hospital (for pediatrics).
The CERN initiative is built around the following interrelated projects: pathology, developmental therapeutics, stem cells and laboratory models, patient outcomes assessment, public awareness and outreach. These complimentary projects are all focused on supporting CERN's clinical trial efforts, which are currently accruing patients to three Phase II trials and one Phase I trial.
On April 19, 2012, the CERN Foundation was joined by patients, caregivers, advocates and health care professionals from around the world in celebrating the first Ependymoma Awareness Day. Ten governmental entities, including the City of Houston and the state of Texas, officially recognized April 19 as Ependymoma Awareness Day.
Hope takes flight
The special day was commemorated with a mass butterfly release on the grounds of the Houstonian Hotel. Over 700 live butterflies were released to honor those affected by ependymoma and to support ependymoma research.
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- What cancer has taught me: emotional health begins with communication
- Tumor tissue donation: should you consent?
- Why me?
- The girl who has it all
- What we call ourselves -- finding the right term for cancer part II
- What we call ourselves -- finding the right term for cancer
- Combining art forms: spirit masks and poems
- Panel Introduces Final Recommendation on PSA Screening Guidelines
- Patients turned advocates: Staying involved to help others
- When 'good' tans go bad: confessions of a tanaholic
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